SPREAD YOUR WINGS
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Mission Statement
Why We Exist December 9th 2021 is a day we will never forget.It’s the day we got the phone call from the doctor explaining the genetic test results had come back. The diagnosis… Angelman Syndrome! The phone call lasted 2 minutes. We froze. We cried. We Googled and then cried a whole lot more. Then we told our family and friends. Their support was overwhelming but everyone’s response was the same, “What is Angelman Syndrome?” The following months passed and we started meeting more and more medical professionals: doctors, nurses, physios… to which very few had heard of it, or if they had they didn’t know the full extent of it. How could this be? We began to feel like a broken record, constantly repeating ourselves and reciting what Google had told us. It’s for that reason we knew we had to do something… Spread Your Wings was initially created to share Leo’s journey, detailing his and our Life with Angelman Syndrome. In establishing the charity, we aim to give hope to other Angelman families, both now through grant awards and increasing opportunities for sport and other physical activities and in the future by funding research into the therapies, treatments and one day a cure for Angelman Syndrome. Our first year after diagnosis has been difficult. Leo has kept us busy, pushing us to what we thought were our limits. But he has guided us through it, taught us the value of simplicity and made us embrace the small things.
About This Cause
Angelman Syndrome (AS) is a rare neurogenetic condition affecting around 1 in 15,000 people, about 500,000 in the world. It affects the nervous system causing severe physical and learning disabilities, little or no speech and issues with movement and balance. A person with Angelman will have near normal life expectancy, but they will require support throughout their life. AS is caused by one of several different types of disruptions of a region of Chromosome 15, all involving a single gene, UBE3A. AS or Angelman Syndrome, was given its name by a British paediatrician, Harry Angelman. He first identified it in 1965. Initially, little was known of the disorder and few other cases were identified. Charitable objectives: 1) FOR THE PUBLIC BENEFIT, TO RELIEVE THE NEED OF INDIVIDUALS AND THEIR FAMILIES AFFECTED BY ANGELMAN SYNDROME AND SIMILAR CONDITIONS BY THE PROVISION OF FINANCIAL SUPPORT FOR MOBILITY AIDS, THERAPY SESSIONS, AND OTHER ESSENTIAL SERVICES DESIGNED TO ASSIST THOSE LIVING WITH THIS CONDITION. 2) THE ADVANCEMENT OF HEALTH, IN PARTICULAR BUT NOT EXCLUSIVELY, BY THE FUNDING OF RESEARCH INTO TREATMENTS AND CURES OF ANGELMAN SYNDROME AND RELATED CONDITIONS. 3) TO PROMOTE FOR THE BENEFIT OF INDIVIDUALS LIVING WITH ANGELMAN SYNDROME OR SIMILAR CONDITIONS THE PROVISION OF FACILITIES FOR RECREATION OR OTHER LEISURE TIME OCCUPATION OF INDIVIDUALS WHO HAVE NEED OF SUCH FACILITIES BY REASON OF THEIR YOUTH, AGE, INFIRMITY OR DISABLEMENT, FINANCIAL HARDSHIP OR SOCIAL AND ECONOMIC CIRCUMSTANCES AND WITH THE OBJECT OF IMPROVING THE CONDITION OF LIFE OF THE SAID INHABITANTS. EXAMPLES MIGHT INCLUDE: TAILORED FAMILY SPORTS DAYS, OPERATED AT A LOCAL LEVEL, THAT CATER FOR ALL THE CHILDREN AND FAMILIES LIVING WITH ANGELMAN SYNDROME OR SIMILAR CONDITIONS AND; GRANT FUNDING SPECIALIST COACHING DAYS TO ALLOW SCHOOLS TO INCLUDE CHILDREN WITH ANGELMAN OR SIMILAR CONDITIONS IN THEIR SPORTING ACTIVITIES.